Well, it looks like I finally have a diagnosis for what is going on with my spine.
I’m pissed, I’m upset, and I wish that it would all go away. I’m unsure what to expect, long term. My doc is a nice guy but he has the tendency to be very fast and “efficient” when he sees you… and doesn’t really spend the time to explain stuff or really listen to you. This bugs me a little. My PT is a doll, however, and she is recommending I get sent to see a rheumatologist to confirm the Dx.
So - to my spine, I say: FUCK YOU AND THE VERTEBRAE YOU RODE IN ON. I’m 27 years old. I don’t need you to start fusing in funny places and cause me constant pain. For YEARS I felt like a hypochondriac for having constant pain, sudden flareups… with an unidentifiable, idiopathic origin…
Finally someone put two and two together, and now they tell me they are almost 100% sure it’s Ankylosing Spondylitis. Part of me feels better to know what’s going on and that I’m not insane. Part of me is scared by what the diagnosis implies.
FUCK IT ALL TO HELL.
I apologize for the lame rant, but the drugs are making me a little fuzzy. I really didn’t need this shit. GNARRRRR. Way to leave me feeling royally defective. I want a refund! I should have taken the extended warranty on this body before I was born, damnit. This is a serious manufacturing defect! What gives, I ask you! There should be a recall! Someone could get hurt!
The good news is, TroubleAgain, that AS progresses slowly, especially in women. So, chances are, it’s just going to suck for many years to come. The upside is that I finally got a diagnosis and that we can actually work on it as to make things better in the long run (and not futz around with stuff that could make it worse.)
I just find it ironic that I train service dogs and could end up using one of my own down the road… feh. FEH. Megafeh.
Well, this sure puts my MCL injury in perspective. Guess I’m done whining about that forever. Good luck to you Elenfair, I can only hope your doctors know what they’re doing and can treat you well enough to avoid chronic pain. Is there a cure for this, or is it only treatable?
I’m sorry to hear about your AS, Elenfair. I’ve dealt with back problems for the last eight years or so (three degenerative disks), but nothing quite as serious as what you’re going through. I can’t imagine what that must be like for you. Maybe now that you have a diagnosis you’ll be able to get some relief.
Do you know if any research is being done on treatments? In some cases, conditions that required major back surgery 10-20 years ago can be corrected with injections today (note that IANAD). Is it possible that in five or 10 years a doctor might be able to unfuse your vertebrae?
It just all around bites, but as the father of one of my students said, today, all in all, it could be worse. I guess it’s all a matter of perspective, really. Thankfully, my pain threshold is surpringly high… I suppose that’s a blessing right now.
I see the rheumatologist soon - that will be a welcome visit. Hopefully we can plan out a course of action from here. It would simply SUCK to end up with a spine that is all stiff and stuff.
Feh. I could use some good news today. Any volunteers?
I feel your grief as far as vertebrae go though, mine seem to enjoy wandering off all of their own accordmutters
Mind if I join in on this rant a little?
Now look vertebrae, I just need you to stay where you are for a little while okay? I do not need to be told at 21 that one of you seems to have taken an interest in moving further inwards into my body. Were you cold or something? The other vertebrae bullying you and you felt that you had to get away from it all? It also doesn’t help that when I see two surgeons (after sitting in that lovely clunking MRI) that one of them says “you need to have an operation now and get it fused” and the other says “wait until you are in too much pain to sleep and then get it fused”, these are two guys in the same hospital so opinions are obviously divided here.
Anyway, at 30 now it looks like the second guy could have been right, I can still put up with how my spine is right now. I can feel it most of the time, but it’s when I’m on my feet for a while or when trying to get up in the mornings that it really likes to make itself felt mutters.
I do hope things go well for you Elen and apologies for not being able to provide the good news you were looking for in your last post.
Feel free to give me a shout if you want to indulge in any griping about these annoying spines and their habits of going wrong
Another spondylolisthesis sufferer chiming in here.
My L4 vertebra was heading forwards in a slower - and lower - imitation of the chestburster from Alien. After years of physical therapy and pain, and having been advised to avoid surgery at all costs until there was no other option, I was eventually told that the time had come to get a spinal fusion. The “second opinion” doc disagreed, but the third agreed with the first, so I had the operation. The fusion apparently didn’t take, so I had a second one a few months later. I’ve got enough steel in there to set off airport metal detectors, plus a battery.
It’s hard to say whether the surgeries were a success or not, since I didn’t have a cloned self to use as a “control” (i.e. who knows how bad it would be if I hadn’t had the operations?). Let’s just say they didn’t ask me for a “pro-surgery testimonial” afterwards.
So, my personal advice to anyone with serious back problems is to avoid surgery except as a truly final resort, although obviously each case is different.
Elenfair, I feel your pain and I’m sorry that this is happening to you. Diagnoses beginning with “spondy-” suck big time. My thoughts are with you, grey_ideas, Cheez_Whia’s husband, ladybug, duffer, and other chronic pain sufferers.
You’re right - anything beginning with “spondy-” seems to be bad news. I try to remind myself that it could be worse… and that it’s good to actually have a diagnosis rather than improvising and feeling like a fool…
Ugh. I barely slept last night. I see the rheumatologist soon. Then, blessed cortisone, baby…
One of my friends from grad school was diagnosed with AS 15 or 20 years ago. They told him (as they no doubt have told/will tell you, if this is still standard therapy) that swimming helps a bunch. And his AS has not really progressed in the time I have known him, so that’s good news, right? So though I can’t speak for other cases, I know he has been able to manage and control his. Best of luck to you!
I think human spines are just a terrible design. So many people suffer, to a greater or lesser extent, from back pain. Me, I can’t hold a candle to AS, but I have rheumatoid arthritis in my spine and a few other joints, so I can sympathize with the constant pain. I hope your treatment really helps you and gives you relief, and that you have an unusually mild case.
